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Wednesday, June 27, 2018

In just a few hours, I will be flying to Seattle for my fourth National Juvenile Arthritis Conference, an annual meeting held in two different locations every summer by the Arthritis Foundation. I am so excited!

Over the past few months, I have found myself flat-out exhausted after extensive interaction with healthy people. There are no words I have ever spoken or written that have made me think that I could help someone living without a chronic illness to "get it." I admire the friends who try anyway, because the trying truly does help. Still, there is nothing like sitting in a room full of people who experience the same things you do, who cry the same tears in their surgeon's office and laugh the same laugh when the needle pops off their syringe, who have the same life-sucking conversations with pharmaceutical companies and sweet chats with nurses who go above and beyond. I am grateful for a community of people who require no explanation, who pass no judgment, who hide no harsh realities. It is the only time of the year in which I do not feel innately problematic. I look across the mass of people and see hundreds of kids with arthritis. Without even thinking, I love them all more than I could ever explain. It is crystal clear to me that each one of them is whole and complete and wonderful and capable and hilarious and hardworking and clever and kind. If I can look at everyone else with such admiration and compassion, I reason that perhaps it would not be so ridiculous to extend a bit of that to myself during the many moments in which I feel like having arthritis makes me a bad person.

While my friends with arthritis play irreplaceable roles in my life, I am thankful for all of my local friends who have become "my people," even when they do not understand what it is like to live with juvenile arthritis or with a chronic illness. Three separate times over the past couple of weeks, people have directly asked me if I might allow them to listen. One friend even pulled up a chair next to me when I had clearly been crying, and did not seem at all phased by the absurd amount of tissues it took for me to get through the conversation. When I promised her that I would pull it together, her immediate response was, "You don't have to." The kindness of my friends has caused me to reflect on how infrequently I ask to listen, and how often I try to steer conversations with my own questions and assumptions instead of being fully open to receiving whatever needs to be received. I am grateful not only for how much my friends care for me, but also for all that they teach me about compassion and about how to better love others. Being someone's "person," even just for five minutes, is much more difficult when you do not understand what a person is going through than when you do, and the bravery that it takes for my local, mostly healthy friends to step into this area of discomfort and of the unknown is not lost on me. I am thankful for their bravery, for their willingness to take risks, for their presence, and for their persistence.

My amazing friend Georgia, who I had the pleasure of hanging out with
today! Every conversation we have is so healing to my soul, and I am
grateful for her gentle passion and her magical ability to understand
what I am trying to say about my experience of chronic illness even
when it is totally disorganized in my own head. She is on her way to
becoming a fabulous nurse, and I am so lucky to call her my friend!

Last year, on the evening I returned from the conference, I went out for late-night ice cream downtown with a beloved friend from home. This friend deserves all my gratitude, because she allowed me to talk and talk and talk about all of the wonderful things I experienced at the conference. I went on for what felt like forever about all of the knowledge I soaked in during my time in Indianapolis, and about how deeply human I felt. I was empowered in a way I had not been in years. I was slipping out of the notion that everything that happened to me in terms of my health was my own fault. I was blessed with a newfound awareness that I was not alone in any of the struggles I was facing. I was speaking about my illness openly and confidently, and I was talking about parts of it that I had never before discussed with "healthy friends." For the first time since my diagnosis, I did not feel an ounce of embarrassment while talking about my disease. My friend expressed how different things seemed, and we were both so grateful for that difference.

A lovely dinner with my sister, Hannah, before she takes
me to the airport in the morning.

While I write a public blog centered around my illness, I hope to never present the false narrative that I am consistently unashamed of my diagnosis or handling it with bravery and resilience. There is nothing wrong with being unashamed, brave, or resilient, but that is just not who I am at this point in my life. I hate that my illness makes life physically painful. I hate that my illness makes people uncomfortable around me or unsure of how to approach me. I hate that my illness makes creating plans with me complicated for other people. I hate all of these things, and if I could wish or pray arthritis away, I would do it in a heartbeat. This spring, I had the opportunity to attend a religious conference without letting anyone know that I had an illness, and it was a revolutionary experience. I loved it. I felt like people were seeing me as Rachel, and it was a desperately-needed opportunity. And yet, I still never felt as whole as I do at the JA Conference, where everyone knows my diagnosis by the color of the bead on my nametag. I walk around with my most painful struggle broadcasted to every new friend I meet, and yet I feel more loved and understood than I do anywhere else.

I am thankful for opportunities to go and be surrounded by my people. I am thankful for my people here at home. I am thankful for my local friends with autoimmune illnesses, who offer me an invaluable support system, and for friends far away who stay in touch and check in frequently. I am thankful for everyone who chooses to make the world a little easier for people with life-altering illnesses. I am thankful for friends who listen, and friends who deliver smoothies, and friends who are thoughtful about the ways in which my illness affects me, and friends who ask questions, and friends who wrap me up in hugs, and friends who promise me that tomorrow will be better even when they have no idea if it will be or not. I have so many people to be thankful for.

Sunday, June 17, 2018

Living with a chronic illness is hard. Living with a body that hurts is hard. This is hard, and what I am writing about below is a small component of what makes it hard.

I never realized how much of my self-identity was wrapped up in what I was capable of until I first got sick in middle school, and then it became very clear very quickly how self-centered I was, even when I thought I was putting others first. While this is a flaw that I take responsibility for, it is also a harmful and damaging reflection of the ableism and individualism that is rampant in our culture, economic system, and religious institutions.

Taken on a beautiful drive right outside of the North Carolinamountains while I went to visit my wonderful grandparents a couple of weekends ago.

Over the past few weeks, I have been overwhelmed by appointments and treatments and medical recommendations that will drastically alter my already limited lifestyle and decisions that need to be made. I have ached unbearably from medications and treatments that are tough on my body and from an illness that is even tougher. I have wondered if my body will ever allow me to do as much as I want to do, or even just as much as a healthy person can do. This question has resulted in a bit of heartbreak, considering that my somewhat tumultuous medical history points to the answer "probably not." I am worried about what that answer will mean for my career, for my friendships, for my faith, and for the years ahead. How do I think about a career when my body is unreliable? How will I sustain friendships when my health is a hot mess? What is the appropriate way to relate to God when everything hurts? How do I plan for the future when I am not certain what state my body will be in tomorrow?

I have not been able to do as much as I want to. I have not been able to work as many hours as I want to, and I have not been able to love people as well as I want to, and I have not responded to as many emails as I want to, and I have not filled up my schedule as much as I want to. I have not been a very good friend or daughter or sister or church member or even puppy snuggler. I have cried to my mom, feeling like a failure, too many times. I want to feel whole and capable again. I feel like a reduced, weakened, and unimpressive version of me.

When my mom casually mentioned a few nights ago that she was proud of me, and that I was doing a good job and doing a lot, I burst into tears. I am a bit weepy these days, especially when my pain levels are high. When a Target employee complimented my eyeliner, I sarcastically joked that it was the only thing that I had done well that day, but my sarcasm was rooted in trying to be funny rather than in disbelieving my own words. My self-esteem is not thriving, but overall I am still doing okay. I have spent healing time laughing in the car with my friends, bonding with strangers in the grocery store, celebrating with people I care about, watching Queer Eye, and listening to people I love tell the very best of stories.

I would like to be able to tell you all that I am on the other side of this period of low self-esteem, but that would not be the truth. I believe in honest conversations about chronic illness, even when they are difficult and even when my belief is reluctant. Chronic illness is hard to live with, and even though I am trying, and even though I am surrounded by good people, it is still hard.

Our little dog, Lexi, who I do not feature enough on this blog

Sometimes I do not feel so great about myself, particularly in ways that relate to and are affected by my illness, and I think that is okay. It is uncomfortable, but it is okay. I know that there are other ways to form an identity, ways that are more sustainable and less egocentric and more in line with my values. While I would much rather be healthy and capable of doing all that I want to do, today I am choosing to be at least a bit grateful for the failure that is forced upon me, not because I am superhuman and capable of praising awful things in some sickening way, but because this seems like the best option for existing today. Perhaps there is something holy about realizing that my body is fragile. There is certainly something holy about the friends and family members who have swooped in with encouragement and kind words and selfless acts, reminding me that I am deeply and undeservedly loved even when I am nauseous and fatigued, and even when the majority of my joints hurt and I am not as functional as I would like to be, and even when I am weepy and frightened. I like to think that there is something holy about honesty and about writing out this experience of feeling like the worst, even though I do not particularly feel like publishing or sharing this post.

Chronic illness is not all IVs, MRI machines, X-rays, appointments, injections, and physical pain, although all of those things can certainly be a part of it. The pain of knowing that you would be a different person without so much pain is present as well. Thank you for listening to this part of it today. Thank you for trying to understand. If you do not have to imagine your life with constant physical pain, if this life is already your reality, then thank you so much for being here.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!